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EnglishObjectives: To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a “patient journey” and narrative method approach. Methods: The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. Results: Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn’t know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. Conclusions: nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care.
Midena E., Varano M., Pilotto E., Staurenghi G., Camparini M., Pece A., et al. (2021). Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting. EYE, 1-11 [10.1038/s41433-021-01470-9].
| Data di pubblicazione: | 2021-03 | |
| Titolo: | Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting | |
| Autori: | ||
| Citazione: | Midena E., Varano M., Pilotto E., Staurenghi G., Camparini M., Pece A., et al. (2021). Real-life patient journey in neovascular age-related macular degeneration: a narrative medicine analysis in the Italian setting. EYE, 1-11 [10.1038/s41433-021-01470-9]. | |
| Rivista: | ||
| Digital Object Identifier (DOI): | http://dx.doi.org/10.1038/s41433-021-01470-9 | |
| Abstract: | Objectives: To investigate the real-life experience of patients affected by neovascular age-related macular degeneration (nAMD), in the healthcare pathway for the management of the disease, using a “patient journey” and narrative method approach. Methods: The patient journey of subjects affected by nAMD was designed using a process-mapping methodology involving a team from 11 Italian centres. Subsequently, narratives were collected from nAMD patients and family members. The interviews were analyzed using the narrative medicine methodology. Results: Eleven specialized retina centres across Italy were involved and 205 narratives collected. In 29% of cases, patients underestimated their symptoms or attributed them to non-pathological causes, thus delaying the specialist consultation. The delay in accessing to care was due to a lack of awareness of this disease (50% of the participants didn’t know what nAMD is) and to critical issues faced at first visit (long waiting lists, failed diagnosis, underestimation of the problem). Despite anti-VEGF therapies were perceived as effective in improving or stabilizing vision in 91% of narratives collected, 77% of patients still reduced or ceased daily activities such as reading and driving. Within the pathway of care there was not a multidisciplinary approach, and the patients were treated just by the ophthalmologist. Conclusions: nAMD may significantly affect the quality of life of affected patients, both from a functional and psychological point of view. The narrative medicine approach highlights some critical points in the healthcare journey of nAMD patients and represents a useful background in implementing patient management algorithms and pathways of care. | |
| Settore Scientifico Disciplinare: | Settore MED/30 - Malattie Apparato Visivo | |
| Appare nelle tipologie: | 1.01 Articolo in rivista |
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